News & Events
Rules for Online Communities
Did you know that the GDATF hosts a moderated Facebook group for patients? The group is closed – which means that group posts and comments can only be viewed by members. In order to join the group, visit our Facebook Page. Select “Join Group” – which is typically in the top right-hand corner, but might be in a different spot depending on whether you are connecting via mobile or desktop. You will then receive a notification message with three questions. You might have to scroll down a bit to see all three. Unfortunately, this is a necessary step to block spammers from joining. (Approvals can take up to one business day). For your convenience, a copy of the guidelines is included below.
Welcome to the GDATF’s Facebook group! This is a *moderated* group. If you do a search for “Graves’ Support”, you will find a number of options for forums with various formats. Some have little or no moderation, and might advocate questionable medical practices. Others will bombard you with advertisements for products or services. Still others will only focus on one of the three available treatment options. All of these formats have advantages and disadvantages. The structure that has been approved by our Board of Directors has been designed to provide an environment that (1) provides reliable information from credible medical sources, (2) welcomes all individuals, regardless of treatment option chosen, and (3) remains free of advertisements and sales pitches. Our goal is to provide an environment where members can count on receiving credible medical information. Please read the group rules below in full prior to posting, as posts that do not conform to the guidelines will be removed without warning, and repeat violations will result in removal from the group.***IMPORTANT NOTE*** If you are having a medical emergency or if you are in a crisis situation, please call 911 or contact the National Suicide Prevention Lifeline at 1-800-273-TALK (8255). Our Admins are happy to answer general questions. However, due to limited staffing, this group does not have an “on call” admin, and GDATF online forums should NEVER be used as a substitute for proper medical care or medical advice. Always discuss any suggestions received with your own physician prior to making any changes to your own treatment regimen.
RULES: The following content is prohibited and will be removed without warning, regardless of whether it appears in a post, a reply, or a comment. If the top level content is removed, all underlying content is automatically deleted by FB. When posts are removed, you will receive a notification indicating which rules were violated. This notification goes ONLY to you, and does NOT mean that the post was “reported to Facebook” – with the exception that spam posts *are* removed and reported to Facebook. Members with repeat violations may be suspended (muted) or removed from the group.
1. MEDICAL ADVICE. Participants are invited to share personal experiences and general information, but are not allowed to give medical advice. “Medical Advice” includes interpreting labs, making a diagnosis, making medication recommendations (dosing, type of med, etc.), or telling another user which treatment option they should select. These are all issues that need to be discussed with each patient’s own medical provider.
2.UNAPPROVED FACEBOOK GROUPS, PATIENT ORGANIZATIONS, LINKS, OR BOOKS. We welcome information from sources committed to evidence-based medicine, such as: (a) well-established, peer-reviewed medical journals (ex: New England Journal of Medicine, The Journal of Clinical Endocrinology and Metabolism, Thyroid, etc.); (b) established physician associations and their members (ex: American Association of Clinical Endocrinologists, American Thyroid Association, American Association of Endocrine Surgeons, American Society of Ophthalmic, Plastic, and Reconstructive Surgery); (c) well-known research hospitals (Mayo Clinic, Cleveland Clinic, Harvard Health, etc.); (d) GDATF-sponsored bulletins, videos, presentations, and websites – including the oneGRAVESvoice rareCURATE section; and (e) government entities (U.S. Food and Drug Administration, National Institutes of Health, etc.). Other unapproved/unverified references will be removed.
3. INACCURATE INFORMATION. Many of our members are newly diagnosed, and the posting of inaccurate information can potentially cause great harm. Prior to posting about treatment options, medicines, autoimmunity, or any other topics, please check with one of the resources described above in #2 – and refrain from posting if you can’t verify the information.
4. DISCUSSION OF “ALTERNATIVE” THERAPIES. Posters may discuss complementary approaches that are practiced in addition to conventional medical therapy to promote general health and well-being, such as yoga, tai chi, meditation, stress relief, etc.. However, our forums prohibit discussions that promote “alternative” therapies designed to replace conventional medical treatment. At this time, there are no proven safe and effective alternatives to the three available conventional treatment options for hyperthyroidism. Our Board members and volunteers have had contact with patients who became more ill – and even those who died – because they chose to reject conventional medicine in favor of an unproven alternative therapy.
5. DISCUSSION OF SUPPLEMENTS. No discussion of supplements is allowed, *except* where there has been evidence-based research specific to Graves’ disease, thyroid eye disease, or autoimmune thyroid dysfunction (selenium, vitamin D, etc.).
6. DEROGATORY OR ATTACKING POSTS. Please debate the topic, not the person. With three different treatment options to choose from – and much about Graves’ disease and autoimmunity that is not yet well understood – disagreements are bound to happen. Please be respectful and civil in stating your position, and do not use derogatory language or otherwise personally attack another poster, moderator, or medical provider.
7. NEGATIVE COMMENTS ON A SPECIFIC PHYSICIAN OR FACILITY. Please do not post negative comments using a physician or medical facility by name.
8. PRODUCTS/SERVICES FOR SALE. Please do not post products or offer services for sale (this includes medical consultations). If you have a product or service that you believe would benefit our community, please contact the GDATF at 877-643-3123 or email@example.com.
9. OFF-TOPIC POSTS. Please keep posts on topic.
10. DUPLICATE COMMENTS ON MULTIPLE THREADS. Please post your comment ONE time, using the thread that is most appropriate to the topic (or starting a new one). Posting the same comment on multiple threads clogs up the group and makes it more difficult for members and facilitators to access information.
ACCEPTABLE: “My liver enzymes became elevated after taking PTU.” (Personal experience.)ACCEPTABLE: “Methimazole is preferred over PTU, except in specific situations, such as patients who can’t tolerate other treatment options and during the first trimester of pregnancy.” (Verified information.)
ACCEPTABLE: “PTU comes with a higher risk of liver failure vs. methimazole.” (Verified information.)NOT ACCEPTABLE: “PTU will damage your liver.” (Not accurate, as only 34 cases of severe liver failure were reported between 1969 and 2009; this is a small risk, but one that doctors should discuss.)
ACCEPTABLE: “My endocrinologist recommended that I take selenium.” (Personal experience, plus a supplement that has been studied specific to Graves’ disease.)
ACCEPTABLE: “My endocrinologist tests my Vitamin D levels. (Personal experience, plus a supplement that has been studied specific to thyroid autoimmunity.)
NOT ACCEPTABLE: “You should take 50,000 IU per day of Vitamin D.” (Medical advice).
NOT ACCEPTABLE: “I take XYZ Oil.” (Supplement not specific to Graves’/TED/thyroid autoimmunity).
ACCEPTABLE: “I’ve started meditating (or doing yoga or practicing tai chi, etc.), and I am finding the practice very helpful.” (Personal experience.)
NOT ACCEPTABLE: “I started a meditation practice and stopped taking my meds.” (Alternative therapies.)
NOT ACCEPTABLE: “I am treating my Graves’ disease naturally.” (Alternative therapies.)
NOT ACCEPTABLE: “Methimazole is bad for you, so you should treat your Graves’ disease naturally.” (Inaccurate information, alternative therapies, medical advice.)
ACCEPTABLE: “I developed TED a year after doing RAI.” (Personal experience.)
ACCEPTABLE: “I had RAI, and my daughter was born with neonatal Graves’. (Personal experience.)
ACCEPTABLE: “For patients with moderate-to-severe or sight-threatening TED, medications or surgery are recommended over RAI.” (Verified information.)
NOT ACCEPTABLE “You should not do RAI.” (Medical advice.)
NOT ACCEPTABLE: “RAI will give you TED.” (Inaccurate information – but there *is* an increased risk, especially for those with high antibodies, high thyroid hormone levels, as well as with smokers.)
NOT ACCEPTABLE: “If you do RAI, your baby will be born with Graves’” (Inaccurate information –Babies born to moms with Graves’ *can* have neonatal Graves’, but occurs in 1-5% of pregnancies, and the risk can be assessed via antibody testing.)
ACCEPTABLE: “Consider seeking a second opinion.”
ACCEPTABLE: “Call your doctor’s office ASAP to confirm whether those instructions are correct.”
ACCEPTABLE: “Ask your doctor’s office for an updated set of labs.”
NOT ACCEPTABLE: “You should lower (or increase) your dose.” (Medical advice.)
NOT ACCEPTABLE: “Your doctor is a moron.” (Derogatory language.)
PAGE vs. GROUP. The GDATF hosts both a *Public Page* and a *Closed Group*. We’ve seen recent cases where people likely meant to post in the Closed Group and instead posted on the Public Page. Please double-check the header before posting; the header for the Closed Group is the GDATF butterfly logo above the wording ******Moderated Facebook Group******
REPORTING A POST. Admins read every single post, reply, and comment, but we can’t cover the forum 24/7. If a post that violates the group rules has slipped through the cracks, click the 3 dots in the top right-hand corner of the post and select “Report to Admin.” Unfortunately, this option does not exist for comments or replies, so you will need to report the original post. For posts that violate Facebook’s Terms of Service, you can click the three dots (for an original post) or select “more” (for a comment or reply) and then select “give feedback or report post.” These comments will go directly to Facebook.
PRIVATE MESSAGING. Private messaging on Facebook is handled by FB and is not controlled in any way by the GDATF. Please use caution when giving out personal information to another member.
NEWS FEED PREFERENCES. If you are overwhelmed with posts going into your news feed, you can select “Joined” at the top of the screen and select “Unfollow”. You will still be a member of the group – and can pop over here any time – but the posts will no longer appear in your feed.
NOTIFICATION PREFERENCES. If you are getting too many notifications, you can select “Notifications” at the top of the screen and adjust the setting to “Highlights”, “Friends’ Posts”, or “Off”.
If you have questions or if you believe a post was removed in error, please tag us in a Facebook post or contact us at 877-643-3123 or firstname.lastname@example.org. The GDATF does not have messaging turned on for our Page or Group (due to issues with personal and Page accounts getting tangled up).